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Communicating cancer and its treatment to Australian Aboriginal and Torres Strait Islander patients with cancer: a qualitative study

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  • Lowitja Institute
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Abstract

PurposeTo investigate the successful strategies of health workers who support and regularly communicate with Aboriginal and Torres Strait Islander people about cancer and its treatment.Methods Semi-structured interviews were conducted face-to face or via telephone and audio-recorded with twenty-three health professionals (medical and radiation oncologists, oncology nurses and Aboriginal Health Workers), 5 identifying as Aboriginal or Torres Strait Islander in the Northern Territory and South Australia. When data saturation was reached, thematic analysis using a bottom up, essentialist/realist approach was used.ResultsSix themes emerged. (1) Create a safe environment, engender trust and build rapport. This involves considering the physical environment and allowing time in interviews to establish a relationship. (2) Employ specific communication strategies to explain cancer, treatment and its side effects through language choices and employing visual aids such as drawings, metaphors and relatable analogies. (3) Obtain support from Aboriginal and Torres Strait Islander staff and patient escorts who can assist in communication. (4) Consider culture which involves collective decision making, strong connection to country and community, with cultural obligations and a unique understanding of cancer. (5) Anticipate the contextual complexities of conflicts between Western medicine and Aboriginal culture, practitioner bias and difficulty maintaining contact with patients. (6) Develop personal qualities of good communicators, including being patient-centred, showing respect, patience, empathy and honesty.Conclusion These insights will help foster more positive interactions with the health system and promote optimal outcomes for Aboriginal and Torres Strait Islander people with cancer.
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https://doi.org/10.1007/s00520-021-06430-3
ORIGINAL ARTICLE
Communicating cancer andits treatment toAustralian Aboriginal
andTorres Strait Islander patients withcancer: aqualitative study
IanOlver1 · KateM.Gunn2· AlwinChong3· VikkiKnott4· KristiaanSpronk2· NayiaCominos5· JoanCunningham6
Received: 14 March 2021 / Accepted: 11 July 2021
© The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2021
Abstract
Purpose To investigate the successful strategies of health workers who support and regularly communicate with Aboriginal
and Torres Strait Islander people about cancer and its treatment.
Methods Semi-structured interviews were conducted face-to face or via telephone and audio-recorded with twenty-three
health professionals (medical and radiation oncologists, oncology nurses and Aboriginal Health Workers), 5 identifying
as Aboriginal or Torres Strait Islander in the Northern Territory and South Australia. When data saturation was reached,
thematic analysis using a bottom up, essentialist/realist approach was used.
Results Six themes emerged. (1) Create a safe environment, engender trust and build rapport. This involves considering the
physical environment and allowing time in interviews to establish a relationship. (2) Employ specific communication strate-
gies to explain cancer, treatment and its side effects through language choices and employing visual aids such as drawings,
metaphors and relatable analogies. (3) Obtain support from Aboriginal and Torres Strait Islander staff and patient escorts
who can assist in communication. (4) Consider culture which involves collective decision making, strong connection to
country and community, with cultural obligations and a unique understanding of cancer. (5) Anticipate the contextual com-
plexities of conflicts between Western medicine and Aboriginal culture, practitioner bias and difficulty maintaining contact
with patients. (6) Develop personal qualities of good communicators, including being patient-centred, showing respect,
patience, empathy and honesty.
Conclusion These insights will help foster more positive interactions with the health system and promote optimal outcomes
for Aboriginal and Torres Strait Islander people with cancer.
Keywords Cancer· Communication· Aboriginal and Torres Strait Islander· Qualitative· Patient education
Introduction
There are known disparities in cancer outcomes between
Aboriginal and Torres Strait Islander and non-Aboriginal
Australians, with a 5-year survival rate of 48% compared to
59% [1]. To help address this, Cancer Australia developed
an optimal care pathway for Aboriginal and Torres Strait
Islander people in consultation with their community, with
communication identified as a principal component needed
to improve care and outcomes [2].
The authors argue that appropriate communication
will assist Aboriginal and Torres Strait Islander people to
respond more effectively to a disease with a stigma that in
the past has had a negative effect on individuals’ uptake of
clinical care in a timely manner.
Barriers to Aboriginal and Torres Strait Islander peo-
ple engaging in cancer treatment vary, but may include
* Ian Olver
ian.olver@adelaide.edu.au
1 School ofPsychology, Faculty ofHealth andMedical
Sciences, The University ofAdelaide, Adelaide, Australia
2 Department ofRural Health, Allied Health andHuman
Performance, University ofSouth Australia, Adelaide,
Australia
3 Division ofHealth Sciences, University ofSouth Australia,
Adelaide, Australia
4 Psychological Sciences, Australian College ofApplied
Psychology, Brisbane, Australia
5 Prideaux Health Professions Education, College ofMedicine
andPublic Health, Flinders University, Adelaide, Australia
6 Menzies School ofHealth Research, Charles Darwin
University, Darwin, NT, Australia
/ Published online: 24 July 2021
Supportive Care in Cancer (2022) 30:431–438
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... Of the 91 studies included in this review, 56% (n = 51) were quantitative studies, 34% (n = 31) were qualitative, 8% (n = 7) were quantitative descriptive, and 2% (n = 2) were mixed methods studies (See Fig. 2). Most of the qualitative studies aimed to explore the perceptions, beliefs, and cancer care experiences of Aboriginal and Torres Strait Islander peoples living with cancer and possible barriers to accessing care [20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38], understanding the perspectives of health care providers and caregivers who provide care to Aboriginal and Torres Strait Islander peoples [39][40][41][42][43], and to describe the role of Aboriginal and Torres Strait Islander health care workers in providing culturally appropriate health care services [44][45][46]. Of the quantitative studies, 5% (n = 5) assessed outcomes in Aboriginal and Torres Strait Islander children specifically [47][48][49][50][51]. ...
... The thematic analysis identified several concerns influencing the experiences of cancer for Aboriginal and Torres Strait Islander peoples relating to cultural insensitivity, including lack of culturally appropriate care services, language barriers, poor understanding of Aboriginal and Torres Strait Islander peoples' perspectives about cancer and the importance of family and community involvement [22,27,32,40,46,[61][62][63][64]. The majority of the included studies reported that care providers lacked an understanding of Aboriginal and Torres Strait Islander culture and how this shaped treatment decisions [42,46,65]. ...
... The thematic analysis identified several concerns influencing the experiences of cancer for Aboriginal and Torres Strait Islander peoples relating to cultural insensitivity, including lack of culturally appropriate care services, language barriers, poor understanding of Aboriginal and Torres Strait Islander peoples' perspectives about cancer and the importance of family and community involvement [22,27,32,40,46,[61][62][63][64]. The majority of the included studies reported that care providers lacked an understanding of Aboriginal and Torres Strait Islander culture and how this shaped treatment decisions [42,46,65]. Included studies highlighted value differences between Aboriginal and Torres Strait Islander cultures and Western cultures [26,27,56]. ...
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... The Indian family system is collectivistic, with primarily joint families, compared to the individualistic approach from the West [5]. Cancer patients differ in their outlook and preference regarding receiving information about their illness, requiring distinct communication models in different parts of the world [6][7][8][9][10][11][12]. The ethical principles of medicine and patient autonomy require the patient to know the diagnosis and play a role in the decision-making [13]. ...
... In the long run, this workplace distress may lead to burnout of oncologists [23]. Each patient and situation is distinct, and BBN requires dynamic assessment of the problem and contextual adaptation of the available communication protocols [12]. A brief and pragmatic approach like PENS may be acceptable to most oncologists. ...
... However, the pattern of care and the patient profile is heterogeneous in different countries and even within the same country. Hence, it is essential to adapt the protocols and develop locally suitable protocols for the common problems faced in daily clinical practice [11,12,21,43,44]. PENS, an abbreviated approach to BBN, is one such protocol specially designed for use in the Indian OP setting. ...
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... pictures, models of the liver that can be pulled apart) was seen to be beneficial in the provision of cirrhosis information and care. In other settings, the use of culturally appropriate language and visual aids were identified as key to improving communication and patients' health literacy among Indigenous patients with viral hepatitis, cancer and dementia (Bryant et al., 2021;Davies et al., 2014;Olver et al., 2021). ...
... Communication between Indigenous patients and health professionals has been identified as a potential impediment to good health outcomes in other chronic disease settings such as cancer (Olver et al., 2021;Shahid et al., 2013). While many participants included in this study recounted positive interactions with the health system, others described negative experiences where attention was needed to improve health professionals' language, communication style, and use of medical terminology. ...
... Potential solutions to effective Indigenous patient-health professional communication have been suggested. These include recruiting more Indigenous staff, providing appropriate cultural training for health professionals, including a patient support person who can assist with communication during the clinical appointment, creating a safe environment and allowing time in which to build rapport (Olver et al., 2021;Shahid et al., 2013). ...
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... Connection to family and kinship is essential for Aboriginal and Torres Strait Islander peoples' identity and wellbeing (Taylor & Guerin, 2019). Family collaboration enables collective decision-making, support, sharing of information, and helps facilitate a culturally safe environment for patients and family members (Olver et al., 2022). Family members are particularly important for language interpreting and helping to identify communication changes post-neurological injury in situations where health professionals and patients do not share the same language (Kelly et al., 2021). ...
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